Joe is the father of two sons with hemophilia. He and his wife, Cazandra, are active members in the bleeding disorders community and often facilitate workshops both locally and nationally. Joe is a pastor in the United Methodist Church and writes a blog about spirituality and faith. You may follow his blog at www.joekmac.com.Last weekend was a testament to the importance of community support for those who struggle with bleeding disorders. As the vice president of Sangre de Oro, the New Mexico chapter of the National Bleeding Disorders Foundation (NBDF), I’ve witnessed the challenges our organization has faced over the years.
When my youngest son, Caeleb, was born over 19 years ago, my wife and I found out that he had hemophilia before leaving the hospital. Devastated, we could not begin to tell anyone how we felt about the diagnosis. I remembered our struggles raising my oldest son, Julian, now…
It’s no secret that I love musicals. My greatest joy is finding phrases from a show’s libretto that speak to my soul. One such event happened when I saw the musical “Wicked” on Broadway. Toward the end of the show, witches Glinda and Elphaba sing a moving ballad in…
“OK, son. It’s time to get out of bed and face the day.” “But Dad, my leg hurts really bad. I don’t think I can go to school today.” Many days when my youngest son, Caeleb, was in high school, he and I began our day with my boy admitting…
Recently, my wife, Cazandra, and I entered an extraordinary time — when our adult sons are enjoying a period of peace with their bleeding disorders. Several months passed, and the only health issues that came into focus were dental surgery for Julian, our oldest, and some minor discomfort for…
Last night, I had very little left in the tank. The past few weeks have brought unique challenges and responsibilities that left me weary. As I started thinking about my column for this week, I realized how much time I’ve spent writing about when my children were small. But what…
I’m a big fan of the stage version of “Wicked.” In the opening of the second act, Glinda (the “Good”) is standing in front of the citizens of Oz, sharing her delight in being center stage. She expresses her humblest gratitutions (you’ll understand why I’m using that strange…
The added expenses of a bleeding disorder — beyond medical costs — are rarely discussed in our community. Yes, I’m talking about the dreaded M-word, which can evoke many negative emotions. Money affects every part of our lives, and for some of us, our relationship with it results in feelings…
As my family started contemplating the people and routines we’ll leave behind in our upcoming job change and move, my thoughts turned to one routine in particular: For over 12 years, I’ve visited my therapist regularly. Her support was a beacon of hope in some of the darkest times;…
When our oldest son, Julian, was about 6 years old, the hemophilia treatment center (HTC) in Houston invited my wife, Cazandra, and me to participate in a program that changed our lives. It was called Parents Empowering Parents, better known as PEP in the bleeding disorders community. Created by social…
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